Understanding Patients' Experiences of Digital Ethics in a Digitalised Healthcare System

To explore patients' experiences and perceptions of using digital health technologies, and their ethical evaluations regarding the processing of personal health data in healthcare digital environments.

An interpretive phenomenological qualitative study reported in accordance with the Consolidated Criteria for Reporting Qualitative Research guidelines. Thirteen outpatients admitted to units at a university hospital were involved through purposive sampling. Face-to-face interviews were conducted using a semi-structured guide. Data were analysed using a thematic analysis approach.

Patients' experiences with digital technologies are multidimensional, with convenience and limitations coexisting. Privacy protection, autonomy over health data, trust in the system and healthcare professionals, data security, and procedural fairness are experienced as compromised. These ethical breaches were associated with patients' perceptions of negative emotional responses and power loss. Participants described themselves as passive users of the systems, particularly due to a lack of transparency in data access and limited opportunities to correct, delete, or restrict the sharing of their data. Strengthening informed consent processes and digital literacy initiatives that enable patients to make informed use of digital systems are fundamental components of ethical protection.

While digital health technologies offer functional conveniences for patients, they present significant ethical vulnerabilities. Privacy violations, weakening of data autonomy, and erosion of trust fundamentally affect data security and the relationship patients have with digital health systems and the wider healthcare system. The rejection of being passive victims in these processes clearly reveals the need for patient-centred digital health governance that prioritises transparent, traceable, and accountable systems, along with data controllability.

This study shows that nurses are essential in promoting patients' ethical and informed use of digital health systems. Nurses should foster patients' digital health literacy, inform them of their rights related to personal health data and consent, identify and report ethical concerns in digital health systems, and encourage patients' active involvement in decisions about their health data. These practices help empower patient autonomy, build trust in digital health systems, and support the delivery of ethical digital health services.

Patients who utilised digital health systems participated in this study exclusively as research subjects. To enhance the credibility of the findings, member checking was conducted with two participants, and their feedback on the emerging themes was obtained. Neither patients nor members of the public were involved in the study's design, conduct, data analysis, interpretation of results, or dissemination planning.